Evie and I spent the day in Charleston on Friday for ECHO’s and EKG’s of our hearts. Pretty funny to be run through the same racket together.

Two for one special!

The picture sums up how Evie felt about getting up at “dark-thirty” to drive to another city for a day of poking and prodding in the hospital….

First off, we are so grateful for the prayers lifted on our behalf. The doctors painted such a grim picture when I began this pregnancy. My midwife group told me they couldnt touch me with a ten-foot-pole and referred me to high risk specialist. Our doctors discussed likely bed-rest….possible emergency surgery….whether the baby could be sustained if I was on heart-lung bypass…..viable age they could take the baby at….

Scenarios that all posed great risks for me and baby.

Yet again, God seems to have overridden medical projections.

Friday was half way through the “critical” phase of my pregnancy. Between 22 and 32 weeks, a mother’s blood volume is increasing so rapidly that they anticipated seeing further growth of my aortic root by this point. There has been no change at all!!

What a very direct and evident answer to prayer this is. Thank you Lord!

If all continues to hold steady, we are on track to deliver our little girl in about 9 weeks. The doctors feel it prudent to deliver her a few weeks early so that delivery of a smaller baby will put minimal strain on my heart. Pray that she is “well done” by 37 weeks and that my heart will continue to sustain this pregnancy!

Evie girl continues to stretch my faith and trust. ECHO revealed that she’s had a bit more dilation in her aortic root. Its minimal. Her doctor is not terribly concerned.

I am.

Its not a lot, I know. But three times now, they have charted increase in this measurement. I just start projecting and realize that if the trend continues at the rate its growing, Evie could be in the “red zone” in a very brief time.

We discussed a blood pressure medication they could try. But the concern is that once she starts, she’ll be on it the rest of her life and the long term side-effects are unknown.

I know its a matter to give back to the Lord. Its not mine to carry. To worry. To anticipate. To try and fix.

But oh how I try!

Ive been a bit grieved the past couple days just by the reminder that her heart is never going to be “normal”. Its a slap of reality that no matter how perfect and healthy she appears and acts, there still may be major obstacles in her future.

She’s still got mountains to overcome and odds to beat.

We have it so easy, I know. This is not insurmountable. We have heart friends who are on transplant lists. Hospitalized for months. Battling daily for their lives.

Our days are full of a life-loving, energetic, bouncy, sassy three-year-old. I am SO thankful!

Fear threatens that joy.

Worry dilutes praise.

Its a choice. A choice to live in eucharisteo….relentless gratitude regardless of circumstances.

I pondered much this weekend….a perfect weekend. Filtered summer sun on our dock. Little ones exploring waters edge. First plunge in the frigid lake. Slightly sunburned shoulders. Rosey cheeks. And Evie in the center of it all giggling and squealing with her painted pink toe nails dabbling in the water.

After baths Sunday night she was sitting on the counter in her white night gown helping me fix dinner. I looked over to see this…

So thankful for unkept curls…

….the smell of Johnsons baby wash…

….the gifts that each day bring with my Evie girl…

….the opportunity to trust Him more fully because of her!

Three years ago tonight, we watched a drama unfold that still send shivers up my spine! They were by far, the most painful hours of my life! The anniversary of Evie’s heart surgery is January 29th, but the 25th was a far more frightening experience!

Three years ago tonight, C and I ‘casually’ swung by the ER out of precaution. Our 10 day old baby girl had refused to eat for several hours and her breathing sounded ‘funny’. We told ourselves we were overreacting, but it seemed prudent to be on the safe side since we live so far from a hospital.

Three years ago tonight, we handed our bundled baby over to a triage nurse to be examined. We watched in disbelief as she called for help when she couldnt get a reading on her pulse-ox machine and when Evie’s temperature read 7o degrees! Her body was shutting down and we didnt even know it. In the arms of a nurse, she was raced back to a room and laid on a gurney. A team of a dozen doctors and nurses swirled around our infant and jockeyed for position around her tiny body. All the color had drained from our once rosy baby. She was completely white….with blue extremities….and totally unresponsive to the painful probing and prodding that was going on. A crash cart was wheeled in. A tube was thrust down her throat forcing oxygen into her lungs. A doctor yelled at a nurse to get a line in. Repeatedly Evie was stuck unsuccessfully. Her tiny angel-hair veins were collapsing. She was flipped to her stomach and a lumbar puncture was performed in haste without any anesthesia. Evie didnt even flinch.

Three years ago tonight, I sobbed in C’s arms watching helplessly just knowing that we were spending the last minutes with our baby on earth. Words like “pneumonia”, “RSV” and “Group B Strep” swirled around us. All terrifying conditions…..but we had no idea the worst was yet to come. Relief was short lived when at last, a nurse managed to thread an IV into a vein. Bruises covered Evies limbs from repeated attempts. A call was made. We were informed a better hospital had dispatched an ambulance to come and get Evie to transfer her to the neonatal ICU. A ride in an ambulance. Dozens of forms and waivers were given to us to sign. And then a long wait as they raced Evie down the corridor of a new hospital and asked us to remain in a private room.

Three years ago tonight, a team of doctor, social worker and support counselor filed into our private room. Seeing the looks on their faces made my own heart stop. We were told our baby was very, very sick. And then the news. The news that our daughter had a broken heart.

Her heart!

Her heart!

A picture was drawn on a napkin representing a normal heart and her heart. They looked nothing alike. We were told that they were working to stabilize her enough to make a Life Flight to Charleston and that she would need surgery as soon as possible. At last they called us in to say good bye to her, telling us the chopper had just arrived and they’d be taking her soon. She was almost unrecognizable under all the tubes and wires. She’d been intubated a second time and harsh tape had left marks on her once flawless skin. Dark ‘glasses’ shielded her eyes from the strong lamp she was under to stabilize her body heat. Still no movement. No response.

Three years ago tonight, we followed by car feeling utterly helpless. The Charleston hospital called to get a verbal release to perform an immediate temporary procedure that would insert a balloon into her heart to open a space and create mixing and oxygenating of blood until surgery could be scheduled. They stated the risk that she might not survive and had to have two people record our verbal consent to proceed since we weren’t there to sign papers.

Three years ago tonight began a long and very painful road for our wee girl. Three years ago tonight began a process that I wouldnt trade for anything. I would never have chosen it, but it has been incomparably redeeming! We have seen the hand of the Lord restore and heal what was broken. We have seen Him comfort in real ways that can only be experienced when the comforts of this world fail you. We have been recipients of the Body of Christ rallying to support and be extensions of the hands and feet of Jesus to us. Our marriage has been strengthened through walking a road of pain together. Our faith has been strengthened through seeing God meet us in our dispair. We have seen answers to prayer that astound us! We have seen miracles!

Today, I had tea time with Evie. Today we ready a dozen nursery rhymes and Fancy Nancy books. Today I heard her contagious giggle when her big brother ticked her. Today she pinched her finger in the door. Today she gave me a Disney Princess picture she colored. Today she dressed herself in her fuzzy pink sweatshirt. Today she asked me to ‘nuggle’ (snuggle) with her when I put her to bed. Today we give thanks. Today we remember!

Psalm 34:4

I sought the Lord, and He answered me;

he delivered me from all my fears.

Our trip to Charleston this week was so special for many reasons. Not only did we receive the wonderful news that Lil’ Bit on the way is heart healthy, but we also got to spend a few moments in the places in that hospital that were “home” to us for an extended period of time when our Evie girl was so sick. The sweet significance of being there as part of her “extended birthday celebration” exactly 3 years after she was an unstable patient there completely overwhelmed me. Evie helped me bake and decorate 9 dozen heart-shaped cookies to deliver to the Pediatric Cardiac Unit and the Step Down floor where she spent weeks recovering after her surgery.

I will forever remember her nurse Joy when Evie was going through a particularly rough spell. She told me of the heart-kids that would come skipping into PCICU two or three years after surgery to visit. That thought gave me such hope to think of returning some day with a healthy child to thank the doctors and nurses who God used to heal her. For these sacrificing folks, we are SO grateful!!

Regarding hearts, I have something else I am at last wanting to share with you friends. We have only disclosed this to our families and a few trusted friends, but it seems time again to ask you…our “extended” family of sorts, to dirty your knees on our behalf.

I myself was recently diagnosed with heart defect that was detected at a pretty advanced stage. My aortic root (where the aorta comes into the heart) is dilating and at risk of rupture. Any further growth could necessitate a surgical repair. I have been rather private until now because frankly, I have felt fine. And perhaps, pride has gotten in the way too. I don’t like drama and feel like we have burdened others so much to pray for our Evie’s healing, I didn’t really want to publicly deal with another crisis. But, God has so graciously dealt with us through the obstacles we have faced over the past few years and we have no doubt that He has used the prayers as so many of you on our behalf. It would be prideful and selfish to not allow you to share with us whatever it is that He wants to do on this road that we now find ourselves. And so, I ask you to journey with us again….

Will you please pray?

The particular risk right now is that doctors are concerned that the increased blood volume during pregnancy will stress the already fragile part of my heart. We are in the midst of discussing the options and I am feeling very grieved by their preliminary plan to possibly take the baby prematurely. I have felt very peaceful about my heart condition and know that they are keeping a close eye and taking every precaution. However, fear has again reared its ugly head…….the thought of a preemie and leaving my baby in ICU again is more than I can bear. It makes me cringe to think of monitors and supplemental oxygen and feeding tubes. My mind wanders to not being able to hold and nurse and bond with my little Ella if she is not big enough and strong enough. We have done that before and it was a nightmare…I so want this birth and infancy to be different than the last! But God knows all this and I am SO glad that we at least have the opportunity to prepare ourselves this time for the possibilities. He who created her inmost beings (and mine) is not taken by surprised. He is not overwhelmed. His arm is not so short that he cannot heal, restore, comfort or console.

Much will be decided closer to the time when they see if my dilation progresses. We are prayerful that it will not and that doctors will feel comfortable letting me carry this baby to term. Thank you for beseeching the Lord with us and covering this wee babe in prayer. He has called her by name and laid on our hearts to choose, Gabriella ~ “God is my might“. We are believing that for her already!